Positivi-tea: Truths about being a parent of a child born with Down Syndrome

What do you do when you find out your son has Down Syndrome right after birth?

Naghma found out that her child, Abdullah, has down syndrome when he was born. Two weeks of clinical tests confirmed his diagnosis. For Naghma, the journey of raising Abdullah was like a roller-coaster ride, with its ups and downs but she managed to persevere with support and love from her friends and family. Initially, she found it hard to process what is going on and there was a period of denial. Her supportive family gave her strength to cope with the stress. She also found support through her pediatrician who gave her confidence and told her that Abdullah will be able to do the things his older brother does, even if it takes some time to achieve them.

At the age of three, Abdullah had his open-heart surgery due to an atrial-septal defect (ASD) which was a very difficult time for his parents. However, with every low there is a high too. His mother believed in having a positive mindset and focus on his achievements, even if they were small. Naghma does feel disheartened and frustrated at times but those small achievements are what keeps her going. KDSP gave her an outlet to meet more mothers with similar experiences, and they became her support system. At KDSP, Abdullah was introduced to WonderGames which he looks forward to playing every week. His mother has noticed an increase in his confidence and self-esteem as he has progressed in the games. As a parent, Naghma has experienced some setbacks, along with achievements but her advice to other parents was to stay strong and patient with their children.

She also emphasized the importance of staying positive because it is easy to internalize all the negativity from the environment especially because of the stigma and societal pressure that comes with having a child with special needs.

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2 Comments

It is just amazing what this program and others like it can do to help! I know what kind of struggles that a family has to experience for a child with special needs– my brother was diagnosed with autism at a young age and I have helped take care of him for years. Children with disabilities need therapy like this to encourage them, to show that their differences don’t have to be a disability but rather an ability. It is wonderful what kind of opportunities this program gives to the patients who need it.

Thank you so much for taking time out and reading this. If you want to share your story with us, please drop us an email at gazette@wondertree.co
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